Tom Galli
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Posts posted by Tom Galli
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Hope
in NSCLC GROUP
I first became acquainted with Radon and its mitigation in the mid 1980s. At that time, I was a US Army Civil Engineer stationed in Michigan and a paper was published in ASCE (American Society of Civil Engineers) that identified the presence of Radon Gas in a rock formation called the Canadian Shield. This formation is bedrock found throughout Canada and extending south into northern US states. Michigan, especially the Upper Peninsula (UP), was identified as an area of concern. Also identified were northeast states including Maine, New Hampshire, Vermont, parts of New York state. Midwestern states including Minnesota, North Dakota and Western states including Colorado, Wyoming, Montana, northern Idaho and Washington State, particularly in the Puget Sound area, were also cited as high concentrations areas. If you live or work in a high-rise building, you may encounter very high concentrations of radon gas because the foundations of "skyscrapers" are build deep into bedrock. Cities of Toronto, Quebec, Vancouver, and New York City, particularly Manhattan, are known to be areas of high radon concentration.
Radon Gas is the decay of radioactive metals (radium, thorium and uranium) that were common in the earth's crust in high concentrations about 4 billion years ago. They've since been covered by sedimentary rocks but these rocks were scoured by intense glaciation in Canada and the northern US starting about 2 million years ago and ending about 100,000 years ago (the ice was a mile thick in the US during the last advance and resulted in the formation of the upper Mississippi river system including the Ohio and Missouri rivers). Radon is so dangerous because it is odorless and invisible. If you live in one of the areas in Canada or the northern tier of the US and your home has a basement, you should have your home tested for radon gas. These days one can get a test kit online. It is a small cardboard box one places in the basement for several months, then mails to the laboratory for analysis.
Radon is second only to smoking as a leading cause of lung cancer. Now with reduced smoking, Radon, in the areas where it occurs, is the leading cause of lung cancer. Fortunately, protection against Radon is a very easy and inexpensive fix sometimes as easy as opening a basement window or installing small fan that ventilates basement air to the outside. We found Radon in Army family housing quarters at Armed Forces installations in Michigan and installed basement ventilation systems.
Stay the course.
Tom
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Good Bro,
Good to hear from you again. Indeed, it was a good football game; an enjoyable contest for I have no stake in either team. Here is the link to Lungevity's Clinical Trial Navigator. I hope this helps.
Stay the course.
Tom
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MzShannon,
Lung cancer biopsies are 2 types these days: a histology examination performed by a pathologist, and a follow up laboratory test to check for targeted therapy and immunotherapy suitability. The former (histology) ought to be almost immediately available because it consists of looking at cells under a microscope. The histology biopsy ought to disclose the type of lung cancer, and this information should be in your mom's medical record now.
Lung cancer comes in 2 types, small cell and non small cell. Non small cell lung cancer has two sub-types: adenocarcinoma and squamous cell. Some forms of adenocarcinoma are treatable with new therapies, termed targeted therapy. Here is information on targeted therapy treatment.
The laboratory biopsy also tests for suitability for a new type of treatment called immunotherapy. This part of the test identifies a cellular expression called PD-L1. If the biopsy exhibits certain ranges of PD-L1, then immunotherapy may be a suitable treatment. Here is information about immunotherapy. Immunotherapy can be used to treat both small cell and non small cell (both adenocarcinoma and squamous cell) types.
Laboratory biopsy results often take about 14 days to generate. Targeted treatment and immunotherapy are game changes in treating lung cancer and often these therapies are used in first line (first treatment) treatment plans. So treatment is normally delayed until the laboratory biopsy results are in hand.
Stay the course.
Tom
- Justin1970, LouT, BridgetO and 1 other
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Gina,
Normally (if the word even applies to lung cancer) one has a CT and a brain scan (MRI) as imaging diagnostics prior to first treatment. It would not be unusual to have a CT that covers from neck to pelvis. When I was diagnosed, a special CT of the head with contrast was used to perform a "brain scan". Now MRI technology is almost universally used to screen for brain metastasis (we say brain mets). Sometimes a PET scan is included in the scan regime. More often, a PET scan is administered at the end of first line treatment (first treatment. Here is information on imaging tests used in diagnosing and screening for lung cancer.
Welcome here.
Stay the course.
Tom
- LouT and Justin1970
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Lost,
Extensive stage small cell lung cancer is a beast. The first best chance of affecting outcomes is successful first line treatment and your post reported that treatment was not successful.
Your report of pain management and palliative care implies hospice care. While no one can predict the amount of remaining life, in the US, hospice care is not provided unless one has a projection of 6 months or less remaining life. I wouldn't know what the Irish standard is. I do however strongly endorse hospice care because end-stage lung cancer can be a very painful experience. Here is some information about hospice care.
What should you be planning for your mother's practical support? When I failed my 4th line treatment and was investigating hospice, I planned to rent a hospital bed (an articulating bed to allow head elevation) and bed-side toilet accommodations. I also investigated the availability of rented portable oxygen equipment and an IV stand. If your mom has a tablet device or an iPad, you might want to investigate getting an articulating stand (Amazon link) so she can use the device without needing to hold it.
You should all be together, my view, during Christmas. This should be a joyful time of sharing family memories. Eating might be a problem but if not, I'd plan a grand Christmas feast with all the trimmings. Sometimes taste buds change with medications given in hospice and tartness or bitterness can become desired. Treats with lemon or lime flavor or dark chocolate might be especially appreciated.
I am a man of faith and planned to attend to my spiritual needs. Your mother may find comfort in her faith so I'd arrange regular visits from the clergy to support and sustain her.
My hope is for your mother to enjoy life right up to its end.
Stay the course.
Tom
- LilyMir, Pstar and Nguyentuan
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MzShanon,
Oh my! Insurance problems are not the complication we'd like right now.
Pleural effusions occur because the lining between the outer lung wall and the inside chest wall is irritated. Cancer can be the irritation but there are other causes. Your mom may have cancer, but cancer might not be the irritation causing the effusion. If the effusion is affecting your mom's ability to breathe or if it is causing pain during breathing, a stent can be positioned to drain the effusion into the abdominal cavity. You might want to engage her new GP in a discussion of alternatives to address the effects of the effusion.
Perhaps the GP and oncologist are in an affiliated practice. If so, then the GP might check if biopsy results are posted to your mom's medical record and if they are, the GP would be able to discuss, in a general sense, the type and stage of lung cancer. You didn't mention a CT scan of the chest in your first post, and perhaps the hospital did not perform one. Moreover, it is general protocol to screen for brain metastasis before starting treatment using an MRI. Accordingly, the GP might order a chest CT and brain MRI so these results would be available to the oncologist on November 15.
I strongly recommend a COVID booster and a senior flu shot. Getting either while in cancer treatment is a nightmare best avoided.
Stay the course.
Tom
- LouT, Justin1970 and LilyMir
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MzShanon,
Welcome here.
Here is information about the thoracentesis procedure as a diagnostic method for lung cancer (click the right arrow ahead of Thoracentesis).
The biopsy of the fluid will disclose the type of lung cancer and here is information about lung cancer types. Deducing a type is important because each type of lung cancer had a different treatment method. You might also received information on biomarker testing of the thoracentesis fluid. This is also important because biomarkers will tell if systemic treatment methods called targeted therapy or immunotherapy are available. These relatively new treatment methods have dramatically moved the survival curve in our disease.
As Lou states, when you received more information about your mom's diagnosis and if you have questions, this is the place for answers.
Stay the course.
Tom
- Samanthagg, MzShanon, Justin1970 and 2 others
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Cin,
Oh my. I can’t recall anyone reporting lung cancer mets to the spleen. I’m sure it happens but in all my years hanging around this forum, I’ve not seen it mentioned.
Hopefully, your spleen spots are like my phantom nodules. Here one scan, goner the next. Great result for your lungs. That is worthy of celebration.
Stay the course.
Tom
- LouT, Cin and Justin1970
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Judy,
What a wonderful post! It is full of hope and really demonstrates the impact of newly introduced treatments. Isn't NED neat?
So I'm a die hard Phillies and Eagles fan. I was born and raised in Philly but stayed a loyal fan while the Army sent me here, there, and everywhere. I live in a Dallas suburb, and my neighbors do not appreciate my protestations of their vaunted Cowboys. So I'm in full agreement with your wise and learned physician. He's rooting for the right teams and teeing up the best treatments for you!
I'm betting your PET/CT Halloween reveal is a NED treat!
Stay the course.
Tom
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LJH,
Welcome here. Lou's pointed you toward Lung Cancer 101 and I do recommend you read it.
But, temper your reading with this understanding: you may not have lung cancer. Lung nodules of the type you describe can be caused by other maladies. Here is my go to resource on lung nodules. You will note nodules occur for lots of reasons including infections, and your long tenured sore throat might be an infection indicator. Indeed, one of your physicians might put you on a board spectrum antibiotic to treat both the throat and perhaps irritation and inflammation in the lung that might be producing your nodules.
Why can't they perform a PET scan? PET scans are not normally reliable indicators of metastatic activity for nodules. PET results at this juncture might just confuse the diagnostic process. We are looking for certainty and certainty for lung cancer only results from a biopsy. A 16mm nodule should be a large enough target for a needle biopsy, but why risk an interventional procedure until other non-interventional means play out. In your case, that is a repeat CT. If the next CT shows no growth in the nodules, you should begin to relax. Then you are likely be put on a scheduled scan to ensure stability. I know, the wait and not knowing are maddening! Believe me, we've all been there. But, I am really hoping your nodules are not lung cancer.
If they are, you'll benefit from an early find. Everything is confined to the right lung and its lower lobe. There are a whole range of curative procedures including surgery and precision radiation that could make your lung cancer treatment an inconvenient bump in your road of life.
You are right about asking questions and your ammunition for terribly perceptive questions is contained in Lung Cancer 101.
OBTW--I was fortunate to be stationed in Seattle two times during my Army career. I miss with a passion Ivar's Fish and Chips and Anthony's Home Port planked salmon.
Stay the course.
Tom
- Judy M2, Justin1970, LJH and 1 other
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Welcome Geoff!
Freaking out seems par for the course in our community. We have a scan and life changes, filled with a strange technical language almost no one understands. My best advice is to learn everything you can about this disease so you can ask terribly preceptive questions to your doctors. Here is where you can make a good start.
As for questions, tee them up. We are not physicians but understand this disease in a way few physicians appreciate.
Stay the course.
Tom
- LouT, Susan Cornett and GeoffR
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Pstar,
I put a lot of faith in precision radiation. Here's to hoping that brain met gets fried, never to return!
Stay the course.
Tom
- Pstar, LouT and Justin1970
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Carrie,
Welcome. We've lots of folks from Canada and BC in particular.
On nodules and their location, I haven't read anything about an anatomical location and lung cancer nodules. Nodules are tricky. After nearly 18 years of survivorship, I have what I call phantom nodules. They show on one scan then disappear on the next. I track them on a spreadsheet to keep my sanity. Here is the place that explained pulmonary nodules and their multitude of causes the best. Note, most pulmonary nodules are not lung cancer, fortunately.
I conclude there is a visible difference on an image; nodular opacity is a circumscribed shadow while ground glass opacity appears white or frosted. Causes however are similar. Here are definitions:
- Nodular Opacity: "a solitary, round, circumscribed shadow found in the lung...causes include granuloma, primary or secondary carcinoma, benign tumor, vascular malformation."
- Ground Glass Opacity (GGO): a normally dark area of the lung now looks white or frosted. There are many causes including infection, fluid, blood, inflammation, scaring or cancer.
Nodules greater than 10mm should be biopsied or removed? I'm not sure I agree that size alone is the governing factor. Lung nodules are a relatively recent phenomena. They don't show on x-rays; CT technology was the discovery method. Here is a 2019 paper that focuses on approaches to and management of lung nodules. Note in particular the information in the "Nodule size" paragraph. This information is complied from a high-lung cancer-risk population and suggests nodules below 6mm are "acceptably low cancer risk" while a nodule >8mm represents risk. But nodules size alone is not the key indicator; it is change in nodule size, particularly increasing nodule size that is of concern. That is why many of us with nodules on scans often need to endure repetitive scans. I've had a multitude and waiting for results produced Scanziety!
I would say that a single scan showing two irregular adjacent opacities of 12mm and 16mm would yield exactly what your doctor suggests--a repeat scan.
I do hope your next scan shows no change in your nodules or that they simply disappear!
Stay the course.
Tom
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Lily,
I was advised to get both the COVID booster and the "senior" flu dose. The only mistake I made was getting both at the same time. I had a couple of days of misery fighting off side effects.
So that's my answer from a lung cancer generally prospective...
Stay the course.
Tom
- LouT, LilyMir and Justin1970
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Karen,
Wow! This is superb news. Of course, you might know I am a big fan of precision radiation and am so happy your treatment blasted those troubling mets.
I don't think any of us has a complete picture on immunotherapy treatment, especially duration of treatment. I've heard there is an emerging standard that suggests 2 years of therapy, then screening. Missing when discussing duration is the fact that immunotherapy works and many late stage lung cancer survivors are leading productive lives because of this treatment. My radiation scarring cleared up and yours will likely clear also.
Stay the course.
Tom
- JuneK, Justin1970, LouT and 1 other
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June,
Your PET results are indeed grand good news! SUV declines are dramatic so your combination chemo is working.
Kudos to your physicians for their aggressive approach. The spot on your hip can be zapped with precision radiation and taken off the table. Your sole lung tumor can be resected. You have a real chance of going from Stage IV to NED! Thank goodness you've got physicians that recognize your individual circumstances and have the courage to step away from a standard of care to give you a real shot at NED.
Assuming you have your surgery and precision radiation, continued treatment with Opdivo is prudent. Lung cancer is so dangerous because it recurs often after "successful" treatment and Opdivo, systemic therapy, will keep attacking stray cancer cells in your blood stream and lymphatic systems before they settle down and form a nodule or tumor.
I can't offer assistance on using our Forum from your phone. My fingers are way too fat and my eyes are too dim to do much more than answer a phone call. Often I screw that up.
Stay the course.
Tom
- JuneK, LouT and Justin1970
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We are always afraid of lung cancer recurrence.
I think it is important to get a CT quickly. Interpreting the scan is the critical part of the examination and radiologists both in Poland and the UK can offer interpretation. So, I'd not be concerned where the scan is administered but ensure your mom carries a CD Rom or flash drive of the actual scan home to be read by radiologists knowledgable of her history.
Stay the course.
Tom
- Justin1970, LilyMir, BridgetO and 3 others
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Kelvin,
Oh boy, Stage 3B and first-line chemo-radiation with immunotherapy was a good plan. Without immunotherapy, I wonder.
The good part of the first-line plan was radiation. Radiation is the killer and it destroys tumor cells (really all cells). The adjuvant chemotherapy is supposed to sweep the blood stream and lymphatic system of stray blood cells. When I had the same first-line treatment, I had 6 rounds of chemotherapy with radiation. Immunotherapy perhaps substituted for additional conventional chemotherapy.
Did your mom have a biopsy and was that biopsy tested at a laboratory for biomarkers? I assume so, but you didn't mention it. Normally biomarkers are identified to check for targeted therapy and immunotherapy suitability before treatment.
We are crossing our fingers and toes for good scans in November.
Stay the course.
Tom
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Oceanna,
Welcome here.
First on using bold, italics and underlined font. Notice the letters B I U S Tx at the top of the page where you write your post. These are the font control keys. When you left click on one of these letters, a gray rectangle appears around the letter. Then your text will reflect bold, italics, underlined, strikeout and etc. Left click again to return to normal font.
Your post described the type of radiation you are having as "high dose focused radiation over 2-3 days". That sounds like precision radiation. There are two general types of radiation used to treat lung cancer: fractional radiation and precision radiation. The former breaks the whole dose into fraction and one receives that fractional does over a number of days. Generally, fractional radiation consists of 30 doses given Monday through Friday given over the span of 6 weeks. Precision radiation is a much higher dose given over very short periods at a very specific area. I had both and both are effective. Here is some more information on radiation used to treat lung cancer.
CyberKnife is a type of stereotactic body radiation therapy (SBRT). More precisely, CyberKnife is a trade name coined by the maker of the machine used to delver the precision radiation. Think of SBRT as a car and CybefKnife as a Ford.
I believe you are describing having radiation therapy prior to surgery and trying to decide which form of radiation you should have. I had fractional radiation (30 sessions of radiation, M-F, for 6 weeks) and weekly chemotherapy (Taxol and Carboplatin) before my surgery. This pre-surgical treatment is normally given together. The radiation attacks the tumor while the chemotherapy ensures all the cancer cells are swept up in the blood stream and lymphatic system. If your doctor is advising you to have this treatment, then you should consider chemo as a necessary part of the treatment. The object is to ensure there are no cancer cells floating around to cause a recurrence after your surgery.
Stay the course.
Tom
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Welcome here.
Michelle has sage advice on a second opinion and engaging with Doctors Liu, Lovly and Moganaki. You haven't given us information about mutations but I assume you have a laboratory analysis of your biopsy because you report combination chemotherapy including Keytruda--an immunotherapy drug. Your PD-L1 markers must have pointed to immunotherapy suitability. You report your tumors increased and sometimes those receiving immunotherapy (Keytruda) exhibit an increase attributed to swelling as the immunotherapy properties take hold.
Michelle's mentioning Drew Moganaki opens up another possible treatment modality. Drew is a radiation oncologist and uses precision radiation (explained here) as a form of treatment. It may be possible for a radiation oncologist to eradicate the spots on your hip and perhaps your lung nodules using stereotactic body precision radiation therapy (SBRT). This holds the advantage of eliminating those spots while chemotherapy treats cells in the blood and lymphatic systems. I progressed to stage IV and SBRT "fried" a troublesome tumor in my left lung which allowed me a long period of extended life (nearly 18 years). This is called treating multi-focal tumors and this method is not a standard of care. That does not mean it is not effective.
At this juncture, it is important to point out that there are two kinds of oncologists that treat us: medical oncologists and radiation oncologists. They use vastly different tools but both have very effective methods. If you seek a second opinion, include separate second opinion with a radiation oncologist about the possibility of treating multi-focal disease with precision radiation methods. A medical oncologist will likely not have insight into this method.
There is a lady who has stage IV disease in our Forum and her only treatment is SBRT. Here is a blog about her experience.
Stay the course.
Tom
- LouT, Justin1970 and Rower Michelle
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Justin,
I've had a similar reaction to the contrast solution infused for CT scans. It is a short duration loss of feeling in my arm and hand occurring always in the arm where the contrast is infused.
Stay the course.
Tom
- Izzy, LouT and Justin1970
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Persistent tumor
in MEMBER UPDATES
Posted
Angel,
Lung cancer is tough going and a short life projection does not ease the tough going. But, consider your 1.5 years is a projection and like all projections it is subject to a margin of error. I've had many projections of early demise in my 18 years of survival history and for a while I believed them. This added depression to the medical challenge of battling lung cancer.
I did not go easy into treatment for depression. It took me a long time to admit I had that kind of a problem. I'm a retired soldier and thought I was mentally tough; tough enough to endure any threat without fear. I held on to that belief far too long and missed many opportunities for experiencing the simple joy of living.
My reality is, now, a belief that lung cancer treatment often extends life. How long is not the right questions. A better question is what am I going to do with the extension. I've learned to forget the past, declare the future irrelevant, and simply live in the day. In my day, I pay attention to the little wonders of life. I search for joyful events, little things that happen in my day and when I see one, I celebrate it. I don't know how long I will live, but I know I will appreciate each day.
As regards sharing information about your lung cancer with family or friends, that is a dilemma that only you can unravel. My wife knew everything. In fact, during treatment, she was the level-headed rational thinker asking terribly preceptive questions about treatment opportunities and outcomes. My daughter has a very strong character, having survived two brain tumors, and she knew the good, bad and ugly. Each of my 3 brothers processed my disease differently. One didn't want to know anything so I had to tailor the amount of information I shared with him. My point is I had to take stock of each person in my family and consider how they would process my lung cancer uncertainty, then tailor information about treatment and outcomes. You may find your situation similar.
You and I share a disease. We might share outcomes. Sharing outcomes is more than possible, it is highly probable. Leave statistics to the statisticians. Focus on what you can control, with absolute certainty, and for me that is a slice of 24 hours starting with each day I wake from sleep.
Stay the course.
Tom